Annaliese

Btw, did they also check renin and angiotensin?

Hi Julie, i wouldnt use florinef on a long term basis unless you have to. After a while your system gets used to producing less aldosterone and you can end up with adrenal atrophy. It also tends to induce headaches. If your dr agrees you could trial for a couple of days to see if youre thirst decreases, that would give you some useful info i think. Im currently using 1/4 of a tablet taken at night (its usualy taken in the morning) so that i dont have nightime hypoxia symptoms which frighten the heck out of me and are probably causing some mild neuropathy.

Julie, as you know, you are prob the closest person on dinet to me in terms of symptoms and onset trigger (ie pregnancy). In fact in think you might be my younger, better looking twin. Im glad youre thinking about this issue because its confusing me also. Here's what i think- its probably wrong but i dont mind being corrected. I think the sympathetic excessive is due to us having hypovolemia and that the hypovolemia was caused by an autoimmne response ( i have no idea what the immune response destroyed here). I looked up shock symptoms" and these seemed spookily similar to what i was experiening (eg massive anxiety). When i first tried salt, nothing seemed to happen so i didnt bother with it. Then after about a year, i gradually lost the high standing blood pressure to the point where my bp was now too low. I then tried florinef. Wow, that was an eye opener, all of a sudden i wasnt so thirsty anymore and i stopped drinking so much and stopped peeing so much. Florinef also stopped the flushing a kicking episodes i was having at night(my nighttime bp is VERY low). My heart rate also lowered on florinef. The other reason i think i have hypovolemia is that my pulse pressure is very low ( about 20). Florinef increased my pulse pressure. Wrt your blood stats, wouldnt your blood stats normalse after a chronic hypovolemic state arose ?.iie, wouldnt the concentration of elements rather tht the absolute value of them be the end goal of the body )Also, wrt pregnancy, yes we had increased blood volume but we also had an increased vasculature to fill. There is no mechanism i know of which regulates blood volume per se. Its more blood pressure thats regulated and as a result blood volume is increased or decreased in responses to the blood pressure requirements of the organs. Based on my symptoms, i think i have low flow pots and in the literature this equates with low renin/aldosterone. Ah, final random thought, i dont see any pooling in my legs either. Btw, have you tried florinef? For me, salt just doesnt compare in terms of vol enhancement. If you do try florinef, start at a low dose. I started at .1mg (1 tab) and it felt like my head and calves were going to explode. Now i take 1/4 tab.

Florinef eventually causes adrenal atrophy. I wonder how long this takes at the typical .1mg dose? Since licorice and dang shen are effectively "drugs", i wonder what long term effects those have if any, havent researched it yet. Anybody know?

Didnt realise that beta blockers dampen the renin response worsening hypovolemia. That's interesting.

Rachel, thanks for the pics!

Rama, i sent you a message but i dont know if it worked as my ipad displays the message box only partially. Theres a guy i met online who is from brissy and had ank spond - he took LDN and it went away! The facebook group is called "Got endorphins?(low dose naltrexone)". He was so impressed with the drug he started up his own LDN company.

I was excessively thirsty until i went on florinef.

How do you take tumeric?

I probably have hyper pots. I started florinef because at night i get very low bp and this results in very scary things happening (like flushing, heart palps and my legs kicking). It reduced the night time problem but gave me headaches and made me feel dizzy. Ive stopped taking it and the headaches have gone but unfortunately the night time probs are back. My ears have felt like theyve been full of fluid since my first pregnancy so im not sure if florinef made this worse or not.

Songcanary and Dani. Im very excited fthat LDN is helping you. Did you find that your BP decreased at all? What about heart rate, any increases there? I heard that your bp might decrease and hr increase on it. Dani, do you mind me asking what sort of POTS you have?

Hi lenna, in what way did it make your son worse? Do you mind me asking what type of pots he has?

Mack's mum. If you take a look at the website l mentioned above, it will give you a laymans description. I wouldnt want to write something that's incorrect.

I urge people who think they have autoimmune disease to look at the research that's currently being done on low dose naltrexone. In clinical trials they have demonstrated positive effects in treating many autoimmune diseases and also HIV. I have spent a long time researching it and now im going to try to convince my gp to prescribe it. See www.lowdosenaltrexone.org/ldn_trials.htm There is also a book called up the creek with a paddle- treatment for ms and all other autoimmune diseases. Plus ive found 2 facebook groups which have many people who are currently using the drug.

I urge people who think they have autoimmune disease to look at the research thats currently being done on low dose naltrexone. In clinical trials they have seen positive effects in treating many autoimmune diseases and also HIV. I have spent a long time researching it and now im going to try to convince my gp to prescribe it. See Ihttp://www.lowdosenaltrexone.org/ldn_trials.htm

Issie, i completely agree with you, an holistic spproach is required. Check out this woman dr on youtube that cured herself of ms by changing her diet. Btw, obviously some med conditions require drug intervention....

Julie, this fits with what happens to me. My favourite time is at night because my anxiety is at its lowest then. I started with classic hyper pots but over a year my standing bp has reduced. It doesnt get high anymore. I have a feeling that i have just as much symp excess as before but my adrenals are just worn out.

The excessive thirst and dry mouth seem sensible if one has low flow pots. I was thirsty for a year until i started taking florinef. Now i could win a spitting comp : )

For me, beta blockers at night were a nightmare as i have low lying bp. I spent a year refining my beta blocker regime and it ended up being a dose at 8 and the again at 2. But, everyone is different. Its useful to look up the time it takes to reach peak levels in the blood and also the rate at which the drug is removed from the blood in order to keep relatively constant levels.

Why did i bring this old one up? Was searching for mentions of LDN and found it. Made me wonder if we can collect any of our own data-theres so much info on here re peoples histories. Otherwise we might die waiting around for researchers to come up with the answers. Did you prefer this one buried? ; )

I had a little bit of POTS after my first pregnancy but i didnt know it at the time- i thought i was just chronically fatigued. The second pregnancy, woahhhh, was sick as soon as i was pregnant. Now i dont leave the house because im so ill. think my pots is autoimmune and autoimmune diseases can be triggered by pregnancy. If you suspect you have any autoimmune condition i wouldnt go there. Otherwise, during part of your pregnancy you can feel slightly better. I guess it depends on whats causing your dys.

I thought sympathetic excess led to decreased urination and decreased bowel motility. It doesnt seem sensible to have to stop for a quick slash behind a tree whilst sprinting away from a lion.... What am i missing here?

Take your BP then and see if its odd. Mine gets very low when lying.

Yes, there is lyme in australia. I know someone with it. Re the causes for pots/dys has anyone ever collected the information from this forum and put it into a database? Most people have their diagnoses up so it would be possible. Ive noticed many if not most people have some sort of autoimmne disease alongside their dys. Perhaps the autoimmune subset proportion has been underestimated in the literature?

Leigh, i too got POTS through pregnancy but before i was pregnant i had a bit of chronic fatigue going on plus IBS. My initial BP was high standing and low lying but now after a year my BP wont go high anymore. I think i have adrenal fatigue. Id be very interested to talk with you more if youre available?